More than flashing lights - Felixstowe women speak out for Epilepsy Awareness Day

Molly Coupe and Esmae Seaman both have epilepsy, which affects them in different ways.

Molly Coupe and Esmae Seaman both have epilepsy, which affects them in different ways. Molly and Esmae's family have spoken out about how their lives are affected by the condition, and why there is far more to it than sensitivity to flashing lights. - Credit: Molly Coupe / Bethany Corrie

It is Epilepsy Awareness Day this Saturday, and many are still unaware of the realities of living with the disorder, say two women from Felixstowe whose lives have been touched by epilepsy in different ways. 

Molly Coupe was eleven when she was diagnosed with epilepsy, while Bethany Corrie and Tom Seaman’s daughter, Esmae, 19 months, was diagnosed in October last year. 

“We knew there was something going on from quite a young age,” said Bethany, 26. 

“It sounds silly, but I thought she was having migraines. She’d squint, it was like the light was bothering her. Then, she’d start screaming hysterically for ages, and she’d sleep for hours.” 

Esmae was rushed into hospital when she was nine months old. 

Bethany Corrie, left, with her older daughter Amelia. Her partner, Tom Seaman, holding Esmae.

Bethany Corrie, left, with her older daughter Amelia. Her partner, Tom Seaman, holding Esmae. - Credit: Bethany Corrie

As she has grown older, Esmae has started to experience focal aware seizures, during which she remains conscious. 

As she has grown older, Esmae has started to experience focal aware seizures, during which she remains conscious. - Credit: Bethany Corrie

Getting diagnosed was a long process, and Esmae was rushed into hospital twice before doctors realised what the problem was.

Getting diagnosed was a long process, and Esmae was rushed into hospital twice before doctors realised what the problem was. Her mother initially worried that Esmae might be having a stroke. - Credit: Bethany Corrie

“The left side of her face had dropped. I actually thought she was having a stroke. She was conscious on this occasion, but you couldn’t get her attention. It was just blank staring.” 

Getting a diagnosis of epilepsy, Bethany said, was a long process, but it was a relief to finally know what Esmae’s condition was. 

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As she has grown older, Esmae has experienced ‘focal aware seizures,’ which happen when the person is conscious. 

“I think it’s worse, because she knows something’s happening. She’s confused, she won’t let us near her, and she gets very aggressive,” said Bethany. 

“After some episodes, she’s not able to walk. She’s had episodes where afterwards, we’ve had to put her on a soft diet and thicken all her fluids, because after she’s had a big episode, she can’t eat and drink properly. She chokes.” 

Molly says the charity Epilepsy Action has been very supportive.

Molly says the charity Epilepsy Action has been very supportive. - Credit: Molly Coupe

Meanwhile, Molly Coupe, 22, received her diagnosis when she was eleven. 

“I've torn a ligament whilst having a seizure, and had to be on crutches for a couple of weeks,” she said.  

“I’ve cut my eyelid, bumped my head, burnt my toe, cut my hand, and also caused bumps and bruises.” 

Molly takes eight tablets each day to control these seizures, known as ‘tonic-clonics,’ which are more commonly associated with epilepsy. She now experiences them around twice a year. 

Harder to control, however, are the ‘absences’ she has daily. 

“Absences are when you blank out and become mentally unconscious for a few seconds,” Molly explained. “It looks like a daydream, but it’s uncontrollable.” 

The charity Epilepsy Action has reported that 20% of people believe that epilepsy can be cured with the right medication, while 27%  believe that the condition has no impact on a person’s life when they are not having seizures.  

This, agree both Molly and Bethany, is simply not the case. 

“I'm not allowed to drive,” said Molly. “That's the biggest inconvenience, because I have to rely on my parents to take me to work, or buses and trains." 

Molly says the biggest inconvenience her epilepsy causes is not being allowed to drive.

Molly says the biggest inconvenience her epilepsy causes is not being allowed to drive. - Credit: Molly Coupe

Big sister Amelia with Esmae.

Big sister Amelia with Esmae. Managing Esmae's epilepsy has been difficult for the whole family, but Bethany and Tom say that Amelia has managed really well. - Credit: Bethany Corrie

“I've been kicked out of sports clubs for having epilepsy as well. I wanted to be a part of a rowing club, so I signed up and was on a year long waiting list. 

“When I finally got on the team, they were aware I had epilepsy but I think they were ignorant to how serious it could be. I ended up having an absence seizure on one of the boats. 

“It was only about two seconds long, but when I turned up for practice the next week, they were like, you can’t be part of the team if you have seizures like that.” 

Both of them wish that people understood that epilepsy is far more than sensitivity to flashing lights. 

“It’s what everyone says, and it’s really frustrating,” said Bethany. “Everyone said she’d grow out of it, but at the moment, doctors don’t think she will.” 

As an adult who did not grow out of her epilepsy, Molly is determined not to let it hold her back. 

“When people learned that I was epileptic and I wanted to do a photography degree, they questioned it. They assumed that every person who suffered from epilepsy was photosensitive. 

“But photography has been my passion since I was young, and I didn’t want to give that up."

Molly graduated last year with a degree in photography.